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Driven to Succeed with Juvenile Myoclonic Epilepsy

Epilepsy patient Claire Vedock.

August 15, 2019

In 2015, Claire Vedock was a happy, healthy teen finishing her senior year of high school. She played on the school’s tennis and soccer teams and on club teams. She couldn’t wait to graduate and launch her adult life at Arizona State University.

But one Saturday in April, Claire’s life changed forever. The morning started happily with Claire’s mom, Lisa, making French toast for the family of 6 at their Lake Quivira, Kansas, home.

Without warning, Claire’s legs began to spasm. A full-body seizure followed. Claire’s dad, Tray, caught her and moved her to a sofa. After an ambulance ride to a local hospital and several exams, Claire was pronounced completely normal.

“As a parent, you’re relieved to hear nothing’s wrong with your child, but you wonder what happened,” says Lisa. “And will it happen again?”

By the time Claire left for college in the fall, she was being treated for juvenile myoclonic epilepsy (JME).

Blinded by a diagnosis

Epilepsy is the 4th most common neurological disorder after stroke and dementia. It can happen at any age. Some patients have a family history of epilepsy. Some, like Claire, do not.

“I don’t remember anything about my seizures,” says Claire. “All I remember is a couple minutes before they happen and when they’re completely over and I come to. I might be studying at my desk and wake up hours later on the floor. I have no warning signs.”

The family sought help from several neurologists who prescribed anti-seizure medications. But Claire’s seizures continued. After 2 years in Arizona, she decided to transfer to a college closer to home. She chose her parents’ alma mater, the University of Kansas in Lawrence, Kansas.

That’s when Claire met epileptologist Carol Ulloa, MD, at The University of Kansas Health System in Kansas City. Dr. Ulloa is a neurologist who is specialty-trained in and focuses exclusively on epilepsy care.

“Dr. Ulloa is amazing,” says Claire. “She spent an hour and a half with us during our first visit. She really listened and helped me understand all my options.”

According to Dr. Ulloa, anyone who continues to have seizures after trying 2 anti-seizure medications should seek a second opinion, preferably at an accredited Level 4 Epilepsy Center, recognized as providing the highest care standards for epilepsy treatment.

“Some physicians resist diagnosing a patient with epilepsy,” she says. “Instead, they call it a seizure disorder. But if it’s really epilepsy, it’s important to label it that way. Knowledge is power. Today, there are many innovative treatments that can get epilepsy under control.”

Finding the right balance

About 65% of patients can become seizure-free with anti-seizure medications. Determining the perfect combination of medicines can prove challenging.

“Everyone’s brain is different. What’s excellent for one patient can make another person feel poorly,” explains Dr. Ulloa.

Anti-seizure medications can cause fatigue, dizziness and other unpleasant side effects. Women have additional considerations. For example, one of the most effective drugs, Valproate, can increase the risk of birth defects. Dr. Ulloa recommends alternatives for reproductive-age females.

For patients who don’t respond to medications, surgery may be an option. Innovative procedures can cure patients with brain lesions, tumors or other neurological abnormalities. Because Claire has generalized epilepsy that occurs on both sides of her brain with no clear cause, she is currently not a candidate for surgery.

“Our team never gives up,” says Dr. Ulloa. “If a medication or procedure doesn’t work, we move on to other options. If we exhaust those options, we monitor and support patients until new treatments become available.”

Growing pains

Facing epilepsy can be daunting at any age. Claire had to confront a new, chronic health disorder at the same time she was adjusting to the social and academic challenges of college.

“I’ve had patients who had to drop out of college because of JME. This type of epilepsy is particularly sensitive to a lack of sleep and drinking alcohol,” explains Dr. Ulloa.

Claire made personal sacrifices to protect her health. She couldn’t pull all-nighters, go out every time a friend called or take weekend road trips. One of the most frustrating limitations for Claire was not being able to drive. In Kansas, those with epilepsy must be seizure-free for 6 months before getting behind the wheel.

“I had to ask for rides everywhere I went,” says Claire. “I was very lucky to have such a great support system of family and friends.”

Back in the driver's seat

Claire underwent a 5-day EEG study at The University of Kansas Hospital. Based on the seizure data collected, Dr. Ulloa changed Claire’s medication. Over the next few weeks, Claire provided feedback that helped Dr. Ulloa fine-tune the dosage. Claire worked hard to avoid activities that could trigger seizures.

The new medication and Claire’s diligence paid off. Her last seizure was in September of 2018. She regained driving privileges 6 months later.

“That was a huge step for my independence,” she states.

“The longer Claire goes without a seizure, the more confident we can feel that this is the right combination,” says Dr. Ulloa.

Educating others

From the beginning, Claire has been matter-of-fact and unsentimental about her condition.

“I don’t go around with a card on my forehead that says I have epilepsy,” she comments. “But I’ve been open with my friends, college professors and anyone who asks about it. It’s not something to be embarrassed about.”

She and her parents think it’s important to raise awareness about epilepsy. Tray became a member of The University of Kansas Health System’s Advancement Board. He and Lisa created a challenge grant to raise money for a new unrestricted epilepsy fund at the hospital.

“We’ve been super impressed with the work they do on a daily basis and their advanced neurological surgery options,” says Tray. “With the right funding, these physicians can explore creative medical and surgical treatments for epilepsy. One day, that may lead to a cure for patients like Claire.”

Paying it forward

In May of 2019, Claire graduated from the University of Kansas. Soon after, she began a marketing career at a company that directs patients to low-cost prescription options.

“My diagnosis led me to work in an industry where I can help others who have health issues,” she says. “My epilepsy has shaped who I am and what I do.”

Patient testimonial: As with all treatments, individual patient results vary. It is important to discuss your treatment options with your healthcare provider.

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